After trauma, parents need space to 'fall apart emotionally'

By Louise Kinross

Say the word ‘trauma’ among parents of kids with complex medical problems and disabilities, and the floodgates open. Maybe their child is medically fragile, and they run a mini-ICU at home, constantly ruminating over how to prevent the next crisis. Maybe their child is losing skills over time. Maybe they’re tired of fighting—at school, with doctors—for what their child needs. Maybe as their peers become empty nesters, supports for their adult child vanish, and their caregiving role ramps up.

In his new book Trauma and the Struggle to Open Up, Dr. Robert T. Muller brings together his own experiences working with people struggling with painful histories, the research on treatments, and a history of how culture influences whether we support, or silence, trauma survivors. “In trauma, ideas about the world and how things ought to work—the illusions we operate under daily, to feel safe and secure—no longer fit our lived experiences,” writes Dr. Muller, who is a clinical psychologist in Toronto and a professor in the faculty of health at York University.

We spoke about how our parents may experience trauma, answered some questions from readers, and looked at how to find help.

BLOOM: What is trauma and how does it impact how we function?

Dr. Robert T. Muller: Trauma is a big word that’s used to mean different things. Of course when we use the definition post-traumatic stress disorder (PTSD), we mean someone who’s had a real experience in the real world that’s left them really struggling in their functioning. These are truly overwhelming experiences. They overwhelm a person’s ability to cope.

It could be physical or sexual abuse in a family, or service people who have been in combat situations, or refugees in war-torn areas. We also see this in people who have experienced huge medical or developmental losses. Perhaps a child has died. They’re left with difficult memories, with flashbacks. These experiences are real and overwhelming.

What’s common is the person is left with great difficulty coping. Trauma also affects the body. People’s cortisol levels get affected, their immune system is affected. We see people who have medical symptoms as a result of these traumatic experiences. They may have ongoing headaches or pain-related problems or be more susceptible to illness. They may have irritable bowel syndrome.

BLOOM: You note in your book that a common response to trauma is avoidance.

Dr. Robert T. Muller: There are people who have known traumas—there’s independent evidence that they’ve had these experiences—yet they avoid thinking about it, they don’t want to talk about it. It’s important to bear in mind that we don’t want to be judgmental of anyone who uses avoidance strategies. They do it for a good reason, because these experiences are truly overwhelming.

BLOOM: It’s a natural protective reaction.

Dr. Robert T. Muller: It’s what we need to do in order to manage, to try to protect ourselves from overwhelming memories. But after a while it catches up with you. There’s only so long you can avoid these things.

BLOOM: What kind of trauma symptoms might we see in parents of children with complex medical problems or disabilities?

Dr. Robert T. Muller: People respond to the disabilities of their children in very different ways. There are a whole range of responses. For some people, raising a child with disabilities can be a highly enriching, growthful and incredibly important experience in their lives. For others, it can be highly stressful and a lot of loss is associated with it. And there’s everything in between. Sometimes it’s both. It’s really complicated.

BLOOM: I’m thinking that there’s a difference between a one-time traumatic event with your child—like learning your child has a disability, but they’re stable health-wise and can learn to adapt—and repeated life-threatening medical emergencies in your child, or dozens of surgeries, and some don’t go as planned, or being slapped, over time, with new life-changing diagnoses that stack up?

Dr. Robert T. Muller: It makes a huge difference. With one-time events, the adjustment can be difficult. Perhaps parents are adjusting to a loss of function in a child. But then, once the loss is recognized, and a plan is made as to how to move forward, and the family is supportive, you can move forward and adapt to the situation. You can deal with a certain amount of loss.

It’s chronic, ongoing loss and deterioration that is so stressful. When there’s chronic deterioration of a child’s functioning, and parents keep hoping, and then that hope ends up turning into more and more loss, that is hugely stressful.

BLOOM: For parents facing those repeated traumas, wouldn’t it be even harder to open up? Like how would they even find the mental space to do that?

Dr. Robert T. Muller: Parents have to have a space that is their own, where they have licence to fall apart emotionally, and say I’m distressed, I’m scared, and to talk about how they’re feeling. It might be with a therapist or a parent support group. Sometimes people may not even feel comfortable sharing their internal fears with their partner, because they feel they have to put on a brave face.

Having a space where you can talk about how you’re feeling, and then, by the end of the hour, put your pieces back together, so you can go out and be supportive of your child, is essential. Of course your child needs to know you’re protecting them as best as you can, and when you’re with your child, you want to be as supportive and positive and hopeful as possible.

BLOOM: I have a question from a reader.

‘I’m very sensitive to seeing or hearing an ambulance. No matter how good a mood I’m in, this encounter sends me straight back to my son being born too early and very sick. I then have a hard time breathing, get a high pulse and I start to cry almost every time. It leaves me drained of energy and becomes a bit awkward sometimes. It is seven years since my son was born, but it still happens. My question: Can I do something to treat this, to better cope? Is it post-traumatic stress disorder? I have told my psychologist about it, but I don’t get any explanation or advice.’ 

Dr. Robert T. Muller: The short answer is that PTSD should be investigated, and it sounds like a distinct possibility. Absolutely, there are things we can do when we know people have experienced traumatic events and they continue to get symptoms. 

The physiological response this parent has to an ambulance indicates a person is being triggered. There are techniques to help people notice their triggers, to begin to identify them and pay attention to them. If they notice them when they’re happening, they may not be as affected for as long.

Then they can start learning grounding strategies: when you notice you’re triggered, you do things to pay attention to the here and now, so you don’t get drawn back into the event. Relaxation and mindfulness strategies can be helpful. Trauma-informed yoga can be helpful. Psycho-education is important.

BLOOM: What’s that?

Dr. Robert T. Muller: Reading about trauma, and how trauma affects the body. The Body Keeps the Score is a profoundly written and very helpful book. My new book is intended to be helpful for people as a resource to learn about trauma. 

Working with a trauma-informed therapist is important. They can teach you how to recognize your triggers, emotional regulation skills, and how to notice, when you’re paying attention to your body, feelings of shame, betrayal and disappointment. These are all feelings that have an effect on the body.

In the medical situations we’re talking about, people sometimes feel betrayed by the medical community. Or they may feel profound disappointment and shame about choices they made in the care of their child. Noticing these feelings, and working through them in therapy, is important.

Martial arts and trauma-informed yoga can be very helpful for people with a trauma history. They teach us to connect with our bodies. People who have had trauma get disconnected from their own body, and drawn into memories, and they can feel like they’re outside their own body.

BLOOM: A few of our parents commented that PTSD is very real for them. But they don’t feel it’s acknowledged. One questioned why they weren’t told in the neonatal intensive care unit that they might struggle with these issues. I thought this tied with a theme in your book about how our culture can make it hard for people to share trauma stories, that there’s a silencing that happens.

Dr. Robert T. Muller: I agree with you about the silencing. One of the great limitations of the medical community is that it’s not become trauma-informed. We see this all the time when someone goes to the family doctor with depression symptoms that are secondary to trauma. And we now know that people who have trauma symptoms, very, very often have depression. The family doctor, in a 15-minute visit, who doesn’t know the person well, may think ‘I’ll try them on an [anti-depressant].’

That’s not a trauma-informed approach. If you have a parent struggling with a child who has multiple medical treatments and disappointments along the way, and feels that the medical community has only partially heard them, this parent is not necessarily going to benefit that much from being put on an [anti-depressant]. They don’t have a standard, garden-variety depression.

This is someone dealing with tremendous loss, and overwhelming feelings secondary to a traumatic event, and they need to be able to sit down and talk with people.

BLOOM: Another theme in your book is about how family members can experience the same event very differently. One of our readers said: ‘Our biggest struggle is managing our feelings and worries around traumatic events while supporting the child who has experienced it, and his siblings.’

Dr. Robert T. Muller: It is so challenging and difficult for parents to navigate this. In a family where there’s a chronic medical condition, there is the worrying about the child and trying to get the child the support and treatment they need. What happens to the couple’s relationship? Is the couple still able to express love and affection towards one another, or is all of the attention placed on the child with the medical illness?

Siblings may feel that no one pays attention to them. I worked with a young man whose brother developed a chronic illness when he was a teen, and it was so hard for him. His father had died, and his mom had to navigate all of the medical care. This client understood what his mom was going through, and loved his mom, and she sounded like a really good mom. Even though a part of him knew that his mother couldn’t, and shouldn’t, have done anything differently in her care of his brother, another part of him felt cheated out of a childhood. In therapy he needed to express his disappointment in his mother.

BLOOM: We have a number of programs for siblings, and I think you’ve hit on that conflict siblings can have where intellectually, they understand why their brother or sister has to be the main focus. They get it! But emotionally, they feel like ‘I want my mom!’

Dr. Robert T. Muller: That’s exactly it, and they need a space to express that.

BLOOM: Another reader asked whether women and men experience trauma differently?

Dr. Robert T. Muller: I think women have done a much better job of making it clear that this is a real thing that needs to be taken seriously. We’re still far away from taking it as seriously as we need to. There aren’t enough support groups for men. There aren’t enough therapists, for example, who focus on treating sexual abuse in men, even though one in six men have a sexual abuse history. Not seeking help doesn’t mean the problem goes away. In men, there’s often a sense that I’m going to tough it out, I’m going to be a guy.

BLOOM: So men may feel pressure not to talk about their feelings.

Dr. Robert T. Muller: It’s better than when I was a kid, but many dads I’ve worked with still feel the need to hold it all together and have difficulty being honest about their vulnerable feelings. We’re moving in the right direction, and giving young men more options to express vulnerability.

BLOOM: One of our parents talked about the isolation she feels because her parent-child experience is out of step with the norm. When her friends are becoming empty nesters, she is coming to terms with the fact that she won’t have an empty nest, and many of the supports her young adult child used to have will vanish. So her responsibilities will be magnified.

Dr. Robert T. Muller: One of the things we’re talking about here is the issue of losses that continue. But it’s not only loss, because it can be very enriching to raise a child with complex developmental needs. 

On the other hand, this individual is being reminded that her friends are watching their kids move out. If this parent finds a way for her child to live independently, it may look very different from her friend’s children. Or maybe the child won’t live independently. Do people understand how difficult it is? How stressful it is? Friends may try to get it, but they don’t quite get it. They don’t get that stressful doesn’t even begin to describe it. That is very isolating.

BLOOM: You talked in your book about how people who have experienced trauma get used to pretending things are fine. This reminded me of a book written by one of our parents, Jennifer Johannesen. Her son Owen had complex medical problems, and died when he was 12. Jennifer wrote about how when she and her son were meeting with therapists, or others out in the world, ‘I would always wear my shining-hero cape.’ We get the sense that professionals expect her to be ‘supermom,’ and keep it all together. ‘There’s nowhere to go with the reality of hopelessness,’ she told me.

Dr. Robert T. Muller: Part of it is that we have these different personas. She had the role of the rescuer or saviour, but it’s an impossible role. When your child is limited in some way, it’s impossible to be the saviour. You need a space where you can feel sad and worried, and open up about it. It may be very difficult for you to do that, but you need it.

BLOOM: You wrote in your book about cultural influences—like the positive thinking movement—that encourage people to suppress sadness.

Dr. Robert T. Muller: Yes. On the one hand, the person knows there’s a loss, but there’s a lot of pressure put on them to wear the super-hero cape. Then, when they feel the loss, they feel bad.

BLOOM: Like, what’s wrong with me?

Dr. Robert T. Muller: That’s shame. It’s important for people to understand that it’s okay to feel a sense of loss. It doesn’t make you a bad parent.

Of course, when we communicate with our child, we want to be positive and supportive and as hopeful as possible. We don’t want our child to become the parent’s therapist.

But a part of us can feel sad and deeply worried. For example, I feel sad that I can’t pay enough attention to my child’s siblings. Parents need to know that it’s okay to feel these things.

BLOOM: I googled ‘trauma, therapist and Toronto,’ and was surprised at how few names came up. How can a parent find a therapist and are they publicly funded?

Dr. Robert T. Muller: There are a number of OHIP-covered trauma programs that are not only for people who are survivors of physical or sexual abuse. A parent who is experiencing post-traumatic symptoms related to a child’s medical illness may be eligible. There’s a program at Women’s College Hospital, at Mount Sinai Hospital, and at the Homewood Health Centre in Guelph. 

What’s important is that the therapist has worked with people who have had different trauma histories. When you’re shopping around for a therapist ask the questions: Have you worked with people who had post-traumatic stress disorder? Have you worked with people who experienced losses because of family issues dealing with a child’s severe disabilities or illness?

BLOOM: In your book you talk about how the relationship between a therapist and client is more important to a good outcome than a particular approach.

Dr. Robert T. Muller: Evidence-based research has been showing this about psychotherapy in general and trauma therapy specifically. In our quest to say ‘I’ve got the best brand of therapy,’ what is lost is that ultimately any brand of therapy is pretty much equivalent—if you have a good therapy relationship where the therapist is very attentive to what’s happening between the therapist and the client. 

The good news is that if you have trauma symptoms from being in a family situation where you’re coping with developmental losses or illnesses or disabilities, and you seek a therapist, and they say ‘I do cognitive behavioural therapy’ or ‘I do emotion-focused therapy,’ those issues are less important than whether the person is trauma-informed.

Do they know how to deal with trauma issues that may come out in the therapy relationship? Painful feelings can be provoked in the client and in the therapist. Perhaps the person had doctors who they feel betrayed by, or deeply disappointed in. Or maybe they had doctors who say ‘Be positive,’ and they feel I can’t ever admit that I’m feeling pretty negative right now. The therapist needs to be really attentive to when the client is hurt by something they say, and when they’re encouraged by something they say. 

You can read more about Dr. Robert T. Muller's work here. He is also the founding editor of The Trauma and Mental Health Report, and lead investigator on several multi-site programs to treat interpersonal trauma. His new book was recognized as the best written work on trauma in 2019 by the International Society for the Study of Trauma and Dissociation.

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Omar says brain injury has turned his shy personality bubbly

By Louise Kinross

Rehan Siddiqui tells the chilling story of how his son and daughter were hit by a car that went through a red light. “She hit both kids going 60 km an hour,” he says. “How could the driver not realize the light was red? There was nothing wrong with the signal.”

Rehan, who sleeps inches away from his son Omar’s hospital bed at Holland Bloorview, says that Omar suffered a severe brain injury and was on life support for 19 days. He spent two months in acute-care, and has been here since January.

Omar, 14, has a slightly different perspective. “It’s a great story to tell my kids,” he says with a smile. “It was like one day I fell asleep, and the next day, I woke up in a wheelchair in this hospital.” The other thing he woke up with, he says, was a new personality.

“Before, I used to be really shy and quiet. I would never crack jokes. I was never brave enough to raise my hand up to answer a question in school. When we did presentations, I wanted to go last.”

Now, “my family says I can never stop talking. I’m always cracking jokes, and I like acting. 'Reporting live,' he says, holding a mock microphone, 'right now, I’m doing an interview with this young lady.'”

When Omar is discharged in two weeks, he says his first order of business is to put together a video for his YouTube channel. “I want to tell the story of my accident and recovery. Bloorview said it might put it on their website for other kids to see.”

Child-life specialist Amarens Matthiesen says Omar has been a great support to other children on the unit.

For example, when Omar encouraged one boy, the patient smiled for the first time. “I said ‘Oh hey, I was just like you. I was sound asleep for a month, and I needed to be in a wheelchair. But look at me now. I can jump. I can run.’ I gave him a lot of motivation.”

Omar used to want to be an architect. “I love to build stuff, and me and my father do handiwork around the house. But I changed my mind since my accident. Now I want to become a YouTuber when I’m older.”

Omar says his best advice for rehab staff is to have fun with patients. “I think most are very good at having a sense of humour, and joking around. Some are really serious, which makes me feel a little uncomfortable.”

Omar says the hardest part of rehab was when his favourite child and youth worker injured herself, and was off work. “She was a beautiful, caring woman who I loved. She would push my wheelchair everywhere, and she would do anything to make me laugh. We had really funny jokes. We were heart to heart.”

Omar is excited about returning to school. “He’s a miracle child,” his father says.

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Hope: 'We cannot take it away from parents'

By Louise Kinross

Imagine coming to the scene of a car accident and being told it’s your child that’s been hit. But your child is not there. She's been taken to the trauma centre, a 30-minute drive away.

Or entering a room and finding your teen unconscious from a self-inflicted injury.

Or hearing a code blue called after taking your child to Emergency with what you thought was the flu. He's suddenly developed a life-threatening illness.

For almost three decades, Holland Bloorview family therapist Caron Gan has heard hundreds of stories from parents whose children suffered a brain injury as a result of unexpected trauma or illness.

“One of the most important things I’ve learned from working with families is the power of supporting hope,” Caron says. “We cannot take it away from parents. Hope is what helps parents keep going for their child. It helps them to catch their breath, so they can be at their best for their child, and be active in their care.”

According to the National Child Traumatic Stress Network, 80 per cent of parents who witness a child’s accident, self-injury or sudden, serious illness experience symptoms of traumatic stress. For about 20 to 30 per cent, these problems will persist in a way that affects everyday life.

“I see a range of responses,” Caron says. “Some parents need to talk openly and candidly about how awful or horrific the experience was. Then I have parents who are not yet ready to talk. It’s way too painful. Avoidance is a common feature of traumatic stress. I know underneath, they’re all experiencing high levels of distress, but coping with it differently.”

Parents often struggle with sleep. They may have trouble falling asleep. They may have nightmares, or wake up in terror, recalling how they found their child, or what doctors told them at the hospital. “They remember every word and detail, and when they describe those earlier experiences, it’s seared into their memory,” Caron says. “Common things I hear from parents are that they were told their child will not walk, or talk, or be able to go to school like they did in the past. Some parents are even asked about organ donation.”

Supporting parent hope is essential, Caron says. “My role is to gauge where the parent is at, and to walk alongside them in that journey. It’s not uncommon for a distraught parent to say ‘I don’t want to hear anything about my child’s brain injury unless I know he or she will have a 100 per cent recovery.’ I've learned that if I don’t hear what that parent is saying about how they want to remain hopeful, and launch into education about what can happen after brain injury, I’ve lost that parent. That parent will have difficulty opening up and trusting me to have further conversations.”

Parents’ readiness to accept their child’s current situation is a process that can’t be rushed. Hope is fluid, Caron says, and changes over time. “Initially, their hope may be that their child will live, and they are so relieved that their child survived. Then it may move to hope that my child will recover fully from their injury or illness. That may morph into hope that my child will make gains in rehab, will walk again or return to school, or adjust to their new normal. It changes from hope for survival, to hope for a full recovery, to hope for the child to live a good life, in spite of their illness or injury.”

Caron embraces the journey. “It’s not something I would try to change by giving a blunt reality check, or telling them what the literature says about outcomes. Families need time to slowly absorb the information, and their hope narrative will change over time.”

Caron says there are variations in how children heal from brain injuries, and offering the range of possibilities helps parents. “They want to know recovery can range from worst-case to best-case scenarios, and that there is no crystal ball. They want honesty from their healthcare providers, but the way it’s delivered can either shut them down, or help them hear what’s said.”

Knowing that most parents in their situation experience depression, anxiety, irritability, guilt and blame helps to normalize their feelings. “When I show parents a handout about what we call pediatric medical traumatic stress, I often hear a sigh of relief. They’ll say ‘You mean I’m normal?’ They need to be given permission to feel what they feel, and to know that it's okay. Acknowledging your feelings doesn't mean you are giving up hope, or will stop fighting for your child.” 

Caron shares tools to help parents calm their symptoms of distress. It may be teaching grounding strategies if they're having flashbacks, to remind them that they aren’t reliving the event. For example, they may learn to name five things they see, hear, feel in their body, and smell, so they know they’re not “back in that nightmare.” They may be taught deep breathing exercises, to visualize a calm place where they feel safe, or to track their emotions in a journal.

Telling their story, in a guided way, is an important part of healing. “I really listen carefully, and with compassion, when families share the details,” Caron says. “They need to reprocess what they’ve been through, otherwise the distress gets locked in the emotional memory of their brain, and can be reactivated when they least expect it.” For example, when they hear a code blue on the unit.

Caron keeps a celebration board in her office where former inpatients have posted graduation pictures. “It helps to cut through some of that despair or fear of hearing the worst-case prognosis. I can talk about how these young people got to know their brain injury, and how it affects them. That these young people had hoped for 100 per cent recovery, but they all had some persisting effects. However, they learned strategies to help them manage those effects, graduate from school and live a good life worth celebrating.”

Acquired disability happens out of the blue, and changes the child the family knew. In this way, it’s different from learning your child has a disability at birth, Caron notes. “These parents had memories and an imagined future with their child that didn’t involve disability. These parents have to mourn the loss of the child as he or she was.”

Brain injury may alter a child’s abilities and personality. “Psychologically or emotionally, the child may feel to the parent like a very different person. Mourning, and letting go of the child that they remember, is really difficult. And outsiders don’t always make it easier.”

That’s because children with brain injury often have an excellent physical recovery, and the lingering effects on thinking, concentration, memory, personality and mood are invisible.

“People will say ‘It’s so great that Johnny’s walking now. He’s in rehab and he’s going to get back to the way he was.’ That creates more distress for families who are grieving inside. They may be told ‘It’s time to move on. Just focus on the positive, and put this behind you.’ But that type of positivity is almost dismissive of the pain they’re going through. Parents may shut down or isolate themselves when their feelings are misunderstood or minimized.”

Sometimes, changes in a child’s abilities, behaviour or emotions may not show up for years, when some people have forgotten that the child even had a brain injury. Often these changes emerge in the teen years, so it's difficult to know if they're due to the brain injury or to adolescence.

Being part of a support community where other parents understand exactly what you’re going through helps. Caron is working with eight parents at Holland Bloorview and the Ontario Brain Injury Association (OBIA)to co-design a four-hour parent workshop that will be launched here in September, and then rolled out across the province. “It’s a place where parents can be comforted, validated and supported, all while learning from one another.”

Traumatic stress in parents tends to be under-identified, Caron says. “There may be a tendency to dismiss the severity of trauma for parents. People may think ‘parents weren’t the ones who went through the traumatic event—it was their child.’ We know that these events have a huge impact on families.”

Clinicians need to remind themselves that they often don’t have the full story of what a parent experienced before arriving here. “If the parent is irritable, or questions staff around what we’re doing, we can’t take it personally. We know from narrative groups with parents that many had to take their child to multiple Emergency rooms before anyone would listen to them. 

“Sometimes, when parents are reactive, or presenting with high stress and anxiety, we need to take the time to hear what their fears are. Learning their back story helps put a different spin on it for us, as clinicians. It’s not about us. It’s about the parent needing to ensure their kid isn’t going to fall through the cracks, like they did before.”

You can register for the OBIA parent education and training program, or, for more information, e-mail Caron at cgan@hollandbloorview.ca.

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When parent hopes and rehab truths clash

By Louise Kinross

Sarah Davidson is an occupational therapist at Holland Bloorview. For 14 years she’s worked with children with complex medical needs who are hospitalized here after painful surgeries or life-changing illness or trauma. Of course, that also means working with their parents. She worked with my son when he was an inpatient. We talked about what it’s like to work with families who are under enormous emotional stress.

BLOOM: How did you get into this field?

Sarah Davidson: I always knew I wanted to work in healthcare. When I finished my undergrad degree, I took four years off and explored different professions. I looked at nursing, medicine and physio and occupational therapy, and OT was what worked out for me. At the time I worked at SickKids in an administrative role. I’ve always wanted to work with kids and once I finished school I waited to start my first job as an OT at Holland Bloorview so that I could find a job that fit with my interests. 

BLOOM: What is a typical day like now?

Sarah Davidson: A lot of the OTs start early. We’re here at 7:30 a.m. That way if a child is learning how to get dressed in a different way, we can assess them and try to help them become more independent. We see a lot of inpatients for active therapy, so we book sessions throughout the day. It could be to work on strengthening their arms, being able to sit while they play and finding ways for them to self-feed. Our main goal is to help kids to be as independent as they can be.

Equipment is a big part of what we do—trying out equipment to toilet, or to be able to have a shower or bath. We do a lot of wheelchair prescriptions and prepare families to go home. It could be talking to a family about how to transport their child with a ventilator.

BLOOM: What’s the greatest joy of the job?

Sarah Davidson: I think, like everyone who works here, we love coming and seeing the children and the families. I love seeing kids make changes and be able to go home with their families, because it’s difficult to be in hospital. I also really love learning about the experiences of the different families I work with and where they come from.

A huge part of my love of this place is the team I work with. I’m surrounded by people who support me and who I can learn from. They’re there when you're not sure what to do, or have a difficult situation. They bring treats. They make you laugh. They know about your life outside of Bloorview, so they know a lot about you as a professional and as a person.

BLOOM: What is the greatest challenge?

Sarah Davidson: One of the greatest challenges for me is balancing a family’s hope for their child’s recovery with my own understanding of what their recovery will look like. We may know, deep down in our hearts, that a child is not going to do some of the things they did before.

I’m thinking about what the family will need to do to get home. Will they need to change how their home is set up? Or move to a different house? Or make decisions about wheelchairs and equipment that they never anticipated their child needing?

We’re at a place where we’re ready to have these conversations, but families often aren’t ready.

The wheelchair conversation is the hardest. 

BLOOM: I know Barbara Gibson has done research about how our culture places so much value on walking.

Sarah Davidson: Sometimes Holland Bloorview is the parents’ first exposure to disability. Their child may have gone through something traumatic and lost a lot of their abilities. And the parents are still grieving and in crisis. Sometimes needing to make significant decisions that will impact their child’s future is just too much. 

BLOOM: It sounds like it’s an emotional process that you can’t rush. On the other hand, you must feel pressure to make sure they have what they need when they go home.

Sarah Davidson: The time they’re here isn’t indefinite, and it’s a window during which we can help support them. The fact that they will need to be discharged is a pressure.

What I’ve learned, after being here for so long, is that some families won’t be ready to make those big decisions while they’re inpatients, and that’s okay. Sometimes they need to go home and live their new reality first.

BLOOM: What kind of emotions come up for you around difficult conversations with families?

Sarah Davidson: Sometimes I get nervous. I can also feel sad when I put myself in the family’s situation—they have to think about things they never thought they would think about.

BLOOM: Do families sometimes lash out at you?

Sarah Davidson: When the family’s stress level is high, it can be directed onto staff. Parents may say hurtful things. I don’t think families realize that we take their situations home with us. I try not to take things personally, but it can be very difficult at times.

BLOOM: As a parent I didn’t think about how it felt to be on the staff side of hard conversations until I heard a therapist here describe it. Is there anything you do to support yourself?

Sarah Davidson: We use our team to help deliver a consistent message. That may be during a family team meeting, or by pulling together a smaller team. So the physio and I may meet with the family together. If the physio has been working on walking, having us both there to make suggestions is helpful.

BLOOM: What do you do to manage your own stress?

Sarah Davidson: I do my best to take my lunches and take advantage of what’s offered at Holland Bloorview. I go swimming at lunch or participate in the weekly mindfulness session. I also participated in the mindful self-compassion group last fall. I go for a walk or come and read in the library. It’s easy to get stuck at your desk working through lunch but when I do, I’m exhausted at the end of the day. Then I’m not really there for my own family.

BLOOM: What qualities are important in your role?

Sarah Davidson: Being able to listen to what families want and need. Even if you’ve done something a few times with clients with the same diagnosis, every family needs something different. Being patient, and realizing you will have to say the information over and over again, in different ways, for families to hear and understand it. Being able to have empathy and compassion for what they’re going through.

BLOOM: What about creativity?

Sarah Davidson: That goes with knowing every family is different. Sometimes you’ll plan for a session but it doesn’t go as you thought it would, and you need to think on the spot to try something different. For the older kids, you can negotiate things, because they understand that you’re trying to help them. But for the younger kids, you have to make what they need to do appear fun.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Sarah Davidson: I think better access to services and resources when families leave here. Our families are fearful and worried about finding community nursing to support kids who have tracheotomies and ventilators. Respite services are limited and families are burning out. Even in a big city like Toronto, the home nursing isn’t there to support families.

Funding is another big area of need. A lot of the equipment is very expensive. We also need better access to therapy services in the community. There’s some, but not always the frequency that is needed.

BLOOM: If you had to give advice to yourself on your first day, from where you stand now, what would you say?

Sarah Davidson: It’s okay not to know everything. You’ll never know everything, and you’ll continue to learn from your colleagues and from every family you work with. When we’re honest with families that we don’t know everything—that we’re not sure about what the best solution is—it makes it easier to partner with them and get their input.

BLOOM: Because we can’t necessarily ‘solve’ things in a traditional sense for many of the kids and families we work with.

Sarah Davidson: Sometimes you can’t change what is. Sometimes you can’t make it better.

BLOOM: If you could change something about our workplace, what would it be?

Sarah Davidson: Recognizing that staff are under an incredible amount of stress. They’re dealing with an ever-increasing complexity of clients and families, and it’s important to offer supports.

For example, I felt valued that we were allowed to take the eight-week mindful self-compassion course. It was a significant amount of time out of our work week that enabled me to connect with clinicians, not just in my program, but across the organization. I got to hear their stories and learn how to better take care of myself.

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